Philadelphia Bound

Here we are just a week before Christmas and we are ready for another trip to Philly. The plan this week will be to travel on Monday, pre-op appointments on Tuesday, surgery on Wednesday, recovery on Thursday and return home on Friday.

We are praying for safe travels, and a complication free surgery. It would be nice for Tristan to have just am expansion this time. It was so nice last time to see him bounce back so quickly.

We will keep you updated with T Man's progress.

Gods peace to all of you.

The West Family

Waiting

Wednesday morning went well considering Tristan wasn't allowed to eat for 12 hours.  In fact he only had one fit about not getting any food.  He even did well when Mommy and Addison left the hotel a few minutes early to get some breakfast without him. 

Addison having a muffin and hot chocolate.

Tristan and I checked into the surgery center a few minutes before 11am and Mommy and Addison arrived shortly after.  11:15ish Tristan and Mommy headed back to pre-op for his IV antibiotics and giggle juice.  Mommy kept Addison and I updated with the following pics. 

Warming up Tristan's hands so they can insert the IV.

Little man did not like the IV.  Of course it did not help that they tried one hand and had to change to the other.

Apple juice chaser after taking his giggle juice (to relax him.)

At about 12:35 Addison and I were allowed to go back and see Tristan for a few minutes.  Then at 12:50pm they took him back to the OR.  He was much more alert this time as he left us and he was so brave and stoic.  The rest of us made our way to the surgical waiting room and set up shop with all the tech gadgets.  Becky did some grading, Addison watched a movie, and I checked work email.

At about 3pm, we got an update from the nurse that they were about finished in the OR and they were going to start closing Tristan back up.  It was shortly after when Dr.Flynn came to speak with us about the surgery.  Dr. Flynn stated that he was able to get another two lengths on the first VEPTR that was installed.  Then he confirmed that the lamina was in fact broken where the second VEPTR was attached to the spine.  Since it was still broken, he had to attach the new bottom clip to the lamina above the broken one, which appeared much stronger.  He also told us to expect to be back in late June or early July.  In addition, Dr. Flynn determined that our plan for a Thursday check out was not going to be possible, which means we will need to extend our stay in Philadelphia. It appears that the hotel can accommodate our extra day, now we are crossing our fingers that we can change our return flight without breaking the bank. 

Tristan moved to the recovery room and soon after Mommy was able to go back and join him.  All the while Addison and I got text updates on his status.  Below is a picture of Tristan still sleeping before he woke up for the first time.  He looks much better this time right out of surgery than other times.  The staff used different pain meds then previously and his comfort level was really good considering what the little guy had been through. Within about an hour and a half he moved to the main recovery floor.

Tristan is now doing well.  He has been drinking lots of apple juice, ginger ale and holding down food without any sickness.  The staff seems to be on top of the pain management and Tristan is resting comfortably.  He is even doing well enough to play some Mario on the Nintendo DS.

Tristan has decided that I should stay the night with him, so Becky and Addison will be leaving soon to go back to the hotel for the evening.  Better pray for Becky tomorrow because I'm sure to be grouchy after multiple sleep interruptions.

That's a wrap to day three of this Philly trip!
The West Family

Surprise!

Our family has traveling to Philadelphia down to a science - packing, getting to the airport, going through security, flying, catching the train, and of course walking to the hotel...........WAIT!  Back that up!  Did I say walking?  Surprisingly, not this time.  Yup.  That's right, Becky let us take a taxi from the train station to the hotel.  Which meant that I did not have to carry a backpack, three suitcases and Tristan.  Shewwwwwww.....it was nice.  It was glorious.  It was everything I had hoped it would be and more...right down to the interesting smell in the cab.

Now...I wonder why Becky let us take the taxi?  Was it the colder weather?  An early Valentine's Day gift?  Perhaps it was the plea that I posted on Facebook asking everyone to text Becky that she should take a taxi this time? (Great responses by the way, Becky loved each of them.)  Or maybe the reason Becky let us take a taxi is the fact that she is 13 weeks pregnant?  Ooppsss...I guess that's not a secret anymore.

Anyway back to us in Philadelphia...we found out before we left Detroit that the Ronald McDonald House did not have a room available.  So the taxi took us straight to the hotel...hello 17th floor!  After we checked in, we went to the local pizza place and got some yummy slices.

After dinner and a quick stop at the local market for some snacks we settled into the hotel room for the night.  Becky tortured the rest of us by insisting on watching the Westminster Dog Show...you've never seen someone get so excited for some small bearded dog to win a category...lucky us, it's a two day show...so I can tell you what we'll be doing Tuesday night, as well. 

Let's move on...to day two of our trip.  Tuesday morning (Valentine's Day) we got up and headed over to CHOP for the usual x-ray, visit with surgeon, visit with anesthesia and blood work.  If you remember our prior post titled, "Always Travel With a Nanny", important conversations are very difficult to comprehend with two fighting children in the room.  This trip we would like to thank the late Steve Jobs and everyone from Apple.  Their great ingenuity has made it possible to comprehend what the surgeon needed to tell us because there was glorious silence from our enraptured children.

The surgeon gave us some very surprising news.  Apparently sometime since Tristan's last surgery his second VEPTR device broke off from his vertebrae, breaking off a piece of Lamia (not sure if that is how that is spelled or not.)  So poor little guy had a broken bone at some point and we didn't know it.  This of course will mean that Tristan can not just have a normal expansion on the two devices.  Instead, he will have a third incision where Dr. Flynn will attempt to either reconnect at the same place (if it has healed) or he will go above or below creating a new place to secure the VEPTR.  This means a slightly more lengthy procedure and perhaps an extra day at the hospital.  (Hopefully, we will still catch our flight back...I won't think about that right now.)

Obviously, we'll know more after surgery and I promise this time we'll update sooner than later...so you aren't all worried.  What I do know is that we check in for surgery at 11am (yes, I know this is MUCH later than we have ever checked in before.)  Poor Tristan can't eat after 11pm at night...so I don't even want to think about the amount of tears and "I'm hungry!" responses we will hear tomorrow.  Once he checks in at 11am, he'll have his IV placed and then he has to have IV antibiotics for an hour before he can go back to the OR.  I hope that we'll be in a recovery room by 4pm...it is no doubt going to be a long day for everyone. 

We'll ask again that you please say prayers that Dr. Flynn and his team will be guided by the Great Physician, that the fixing of this broken bone will be smooth and that the expansion will give better alignment to the spine.  Wait...I've got to say something else here or Becky will remind me that one sentence does NOT make a paragraph.  Um, I guess that rant officially makes this a paragraph.

Thanks for traveling with us on this journey,
The West Family 

Sorry! I'm a slacker.

Can’t believe that it was four and half months ago that Tristan had his last surgery. Guess we slacked off with posting on the blog…forgive us. As an update, Tristan’s last surgery went great. He did have the 2nd VEPTR placed and with two rods instead of one, he has stayed much straighter. (See picture below with two devices.)



Tristan's X-ray with both Rib to Spine VEPTR's.  Taken 9/28/2011


It took less time for Tristan to heal than with the first VEPTR placement. The doctor had said that would happen, but we were skeptical. It seemed like no time before we were back in Michigan and getting on with life.

Tristan has been enjoying his last few surgery-free months and he was “adopted” by the Rainbow Connection (a wish granting organization here in Michigan.) He was given four tickets to see the Red Wings a few months ago (he kindly took his sister, Mom and Dad with him to the game.) He also was given four tickets to the International Auto Show and this time he took his Mom, Grandpa “The Edward” and Uncle Tim. Here are a few of the pictures of the fun he’s been having around town.

Next week we will be back in Philadelphia for Tristan’s fourth surgery. The actual surgery date will be Wednesday, February 15th. We appreciate your prayers for safety as we travel and most certainly for the surgery and recovery. We’ll post more next week.

We'll leave you with a song and dance from the next Donny and Marie....

God Bless,

Adam, Rebecca, Addison (5 ¼), and Tristan (3 ¼)